Applying User-Centered Design in the Development of a Supportive mHealth App for Women in Substance Use Recovery.

PURPOSE AND APPROACH: Women in recovery describe stigma, negative treatment, and limited support as barriers to achieving their health and parenting goals. Mobile health technologies carefully tailored to support the unique needs of recovery communities can provide less burdensome alternatives to in-person services for women transitioning out of substance use treatment. An iterative design process integrated women's interests into the structure, content, and interaction flow of a mobile health (mHealth) app. SETTING AND PARTICIPANTS: Participants included women in recovery from opioid, alcohol, and polysubstance use disorders in a comprehensive housing program in urban Arizona. METHODS: Five focus groups with 3-7 participants each (n = 27 total) informed creation of the mHealth app. Informed by theoretical models of usability and person-centered design, development involved an iterative series of focus groups in which we asked women to comment on interest in using each feature. This provided a qualitative priority framework for feature development. We then modified the app and repeated the process to gauge consensus and continually refine our prototype. RESULTS: Women were interested in access to resources, such as housing, counseling, and parenting advice in settings known to treat women in recovery with respect. They also asked for positive messages, chatting with peers, and access to expert answers. They were less interested in points-based learning modules and "scored" activities, leading us to develop a "daily challenges" concept that builds good habits, but does not feel like "classwork". Women's recommendations shaped an mHealth app tailored to maximize utility, access, and safety for this at-risk population. CONCLUSION: Integration of user-centered design with applied ethnographic techniques guided the development of a custom-tailored mHealth app responsive to lived experiences and needs of women in recovery. Future research should evaluate the potential for user-centered apps to increase self-efficacy, perceived social support, and to reduce risk of relapse.

Experience of Daily Life with Generalized Myasthenia Gravis: A Qualitative Investigation and Assessment of Instrument Content Validity.

INTRODUCTION: Generalized myasthenia gravis (gMG) is a rare autoimmune disease. Symptoms of gMG are diverse, and understanding of their impact on patients is limited. This qualitative study aimed to provide an in-depth exploration of patients' daily experiences of gMG. METHODS: Published qualitative studies were reviewed to identify the most important signs, symptoms, and functional impacts related to the patient experience in gMG. Semi-structured hybrid concept elicitation interviews (allowing spontaneous generation of disease concepts) and cognitive debriefing interviews (assessing the validity of existing disease assessments) were conducted with clinicians and adult patients with gMG. Signs, symptoms, and impacts were reviewed to understand which were most salient (i.e., reported by at least 50% of patients, with disturbance rating 5 or higher [10-point numeric scale]); concept saturation was also assessed. The disease conceptual model was updated. Existing clinical outcomes assessments (COAs) that capture how patients feel, function, and survive were assessed. RESULTS: Interviews with patients (n = 24) identified seven new signs and symptoms and 37 new impacts compared with the literature. Concept saturation was reached. Signs and symptoms identified by patients as most important (salient) were shortness of breath, general fatigue, muscle weakness of arms, legs, and neck, dysphonia, dysarthria, trouble swallowing liquids, choking, and heat sensitivity. Patient-identified salient impacts were work life, depression, difficulty walking, grooming hair, showering, and brushing teeth, eating, personal relationships, family life, and participating in social activities. Clinicians considered ocular, respiratory, swallowing, speech/talking, and extremity function as key clinical manifestations of gMG. Patients and clinicians found clinical outcome assessments (COAs) to be conceptually relevant and comprehensive. CONCLUSION: This research provides a holistic understanding of gMG signs, symptoms, and impacts experienced by patients, as observed by patients and clinicians. The conceptual model of gMG highlights the range of signs, symptoms, and impacts that adult patients with gMG experience in their everyday lives, emphasizing the humanistic impact and unmet needs.

Possibilities and constraints of rapid online ethnography: Lessons from a rapid assessment of COVID-19 policy for people who use drugs.

During the COVID-19 Pandemic, health care provision changed rapidly and funding became available to assess pandemic-related policy change. Research activities, however, were limited to contactless, online delivery. It was clear early on that some elements of online rapid ethnography were feasible and effective, while others would not approach traditional ethnographic depth. We conducted an online Rapid Assessment, Response, and Evaluation (RARE) project from August 2020 to September 2021 to understand how COVID-19 policy impacted people who use drugs. Our interdisciplinary research team conducted online ethnographic interviews and focus groups with 45 providers and community stakeholders, and 19 clients from rural and urban areas throughout Arizona. In addition, 26 webinars, online trainings, and virtual conferences focused on opioid policy and medication for opioid use disorders (MOUD) were opportunities to observe conversations among providers and program representatives about how best to implement policy changes, how to reach people in recovery, and what aspects of the changes should carry forward into better all-around opioid services in the future. Our RARE project was successful in collecting a range of providers' perspectives on both rural and urban implementation of take-home MOUDs as well as a wide view of national conversations, but client perspectives were limited to those who were not impacted by the policies and continued to attend in-person daily clinic visits. We describe challenges to online rapid ethnography and how online research may have allowed for an in-depth, but incomplete picture of how policy changes during COVID-19 policy affected people with opioid use disorders.